We must take action

[Erik]

We have to take consistent action to get out of this. We cannot just passively rely on our own natural recovery and individualistic path towards healing. We must each take part in the bigger picture battle against this disease.

If everyone just takes small consistent action we will get out of this. We need unified action. If you’re currently lurking right now and reading this I would like to address a few possible reasons why you might currently not be involved in the fight.

“My individual actions will not make a difference”

Not true. Every email sent out to relevant parties, each donation, each conversation informing someone of this condition helps move the needle. You do not need to have the same output as Sugarhouse or Axolotl. Every action compounds over time. Getting involved also helps inspire those currently taking action and galvanises others. Your action taking is valuable.

"I can just supplement my way out of this with X, Y, Z’s protocol

Go ahead and experiment if you want. It’s not mutually exclusive with taking action that centres around the bigger picture regarding research and awareness. No one is saying you need to stop trying certain diets, protocols etc. But it is extremely unwise to refuse to do anything for the bigger picture. Don’t put all your eggs in one basket. You can continue attempting short term solutions while also being a part of the longer term efforts, which in turn reduces the time it will take for scientific findings and acceptance of this condition.

I don’t want to help raise awareness as the more people who get PFS the more likely it is this condition will be taken seriously

PSSD has a much, much larger patient community than PFS does. They are much further behind than the PFS community. This is not logical. No awareness = no focus or attention on this issue, which is bad for you.

"I don’t want to psychologically accept that I have PFS. If I donate to research, report my side effects, or help spread awareness I am admitting to myself that I have PFS. This is profoundly uncomfortable for me psychologically

Sorry but denying reality doesn’t get you anywhere. There is real hope of curing this condition, but that is contingent on people like you taking action. Burying your head in the sand like an ostrich doesn’t help yourself. You need to overcome the denial phase so that you can confront reality and help change the situation.

It’s hopeless. We can’t fix this

Same has been said for diseases which are now cured. Leading scientists who are working on this pro bono with multidisciplinary backgrounds in prostate cancer and androgen receptor research disagree. Such catastrophic negative conclusions are unfounded. Extreme pessimism does not equal realism. There is plenty of reason for hope. Natural recoveries, although rare, and profound temporary recoveries are additional reasons to believe this is ultimately treatable.

If you’re currently lurking and reading this message I sincerely hope you will consider getting involved. We would love to have you on board assisting the efforts to correct this.

[Balph]

Well said Erik.

The time has come for people to step out of the shadows and act.

A very brave few have laid the groundwork before us and have put into motion the way out of this mess. However, the wheels of the vehicle just aren’t turning fast enough. More funding means more studies and more scientists per study. The more efficient the research, the quicker we get out of here and can resume our normal lives. Imagine how transformative it would be if we had teams of scientists whose literal job is to wake up in the morning and work on solving PFS. This is the paradigm shift that needs to occur.

I was totally gobsmacked that the European webinar had a grand total of 7 attendees (including the facilitator). Where is everybody? This seriously needs to change ASAP.

The gene technology to curing us is around the corner, if not already here. What we are missing is scientific evidence of causation and a biomarker. Once we have these things, the situation will drastically change, effectively snowballing us back to our old lives.

The Movember initiative and proposed “Three Mothers Walking” event are two great examples of proposed upcoming awareness events that are currently in the pipeline, however, we desperately need more plates spinning. I implore anyone reading this to start thinking of ways we can increase external outreach. I would like to see a forum where such ideas are discussed on the daily, taking the place of all the useless and misleading protocol discussions that obscure the topics that actually matter. Additionally, I ask everyone to consider donating to the PFS Network, and implore they convince their personal networks to do the same.

We will make it out of here, but we need to act now.

Please note that I am not affiliated with the PFS Network, and these are just my personal thoughts on what needs to be done.

[Recovery18]

Erik,

I agree. This is very well said. Several other incredible men have the laid the foundations for this research in our community and I’m personally grateful for their efforts. This momentum is picking up. We just all need to work together to continue building awareness for this cause and donating what we can to the network. I am somebody who, ironically enough, has never had an issue investing in his health - be it purchasing supplements, fitness equipment, books, etc. This right here is the ultimate investment in your health. We all want our old lives back, which I’m confident we can get if we all just work together. An understanding of the mechanism behind what causes this crazy disease could be the catalyst for a profound understanding of many more diseases. This is bigger than PFS; this is about the health and wellness of every human being. We all need to collectively start looking at this big picture and KNOWING that this can be fixed, but it’s going to take the effort from our community to do it.

To everyone on here, think about (I mean really think about it) the new, enlightened perspective you’ll have on life when this is all said and done. We will be the modern day warriors that overcame something so sinister that very few will understand. Imagine the empathy, hope and drive you will have developed from going through all this. Imagine the impact and legacy we will have on the world when we can start pursing our passions and dreams again. Every day will be a new beginning with purpose and beauty. We will share our hellish experience with others who are at their lowest and be able to tell them with true sincerity that, “You are stronger than realize and you will get through this.”, (whatever that may be for them). We will share this wisdom with our children, grandchildren, friends, family, strangers; anyone who needs to hear it who feels like they can’t go on. The positive effects our recovery will have on the world will be unstoppable. This is bigger than us.

“The strongest steel is forged in the hottest fire.”

[PFSwarrior]

Hey Erik,

I’m a new member of the community who suffers from PFS since 4 months and finally signed up to this page inspired by your posts. (See here for my inital post: Link)

I am willing to contribute to the fight against this terrible and debilitating condition and wanted to ask if you need any further support for the Movember-project. Do you still need videos from members describing their experience with PFS? Or do you need help preparing further meetings with the members of the Movember foundation? I am willing to contribute a substantial amount of my time on the project and could for example help you to assemble a PowerPoint presentation. Please feel free to reach out to me via PM, I would definitely be down to have a video call.

Also for anyone else in here, if you have a credible project that can help to further our cause, please reach out to me, I’m willing to help.

Also, I have two projects in mind to kickstart myself together with a friend who suffers from Post-Accutance-Syndrome. Since an essential part of the way to finding a treatment/cure is a wide acknowledgment of our condition, we are aiming to send a letter to different health authorities in Germany (our home country) describing the latest research findings about PFS in order to convince them to officially recognize PFS as a disease. I’m sure there have been initiatives like this previously started by the PFS Network and/or the PFS Foundation. Maybe some of the more senior members of this community are familiar with such an approach and could help us by maybe providing us with a template that has been used previously or by giving us advice on which channels/ways worked in other countries in the past to get our initiative to the right people.
The second initiative is admittedly a little bit of a moonshot - but you gotta aim for the stars to reach the moon. I was thinking about reaching out to the producers of the “Take your pill”-series on Netflix. It might be a far shot to ask them to make a documentary about Finasteride and PFS given that PFS is not even recognized by the medical community. But if they would respond to us, this could give us huge outreach. And again, maybe Erik, or someone else might be able to provide me with a template for a first-outreach Email they have used before.

Hope this post keeps this discussion going. Let’s fight this together!

[infinite]

Could not agree more with everything that has been written here. With the upcoming Kiel study + the other amazing work that Mitch and the moderators have undertaken, this is the most momentum that the community has probably ever had.

This is the perfect opportunity for patients to get involved and contribute to the cause. To put things in perspective, EU research funding is a realistic possibility next year. This is contingent
both on preliminary results from Kiel, and also on them seeing it as a worthwhile issue to fund. We need to push on a PR front, and we need to push hard. I don’t need to spell out the significance of getting a research grant.

If you’re reading this and wondering how you can help, start by writing to your medical regulatory agency. If you’re in the UK and want to coordinate outreach to journalists, PM me. There are lots of other avenues to explore as well. It’s time to step up.

[Recovery18]

I will be writing to the National Institutes of Health (NIH) in the U.S. if anyone wants to join.

[PFSwarrior]

Hey infinite and Recovery18,

I am willing to support you guys both in your initiatives. Can you maybe reach out to me by PM? (As I new member I am somehow not able to figure out how to PM someone in this forum ) Maybe we can schedule a video call or smth to move this forward

[Erik]

Thanks a lot for your kind words. I think it’s essential that we keep pushing this issue forward to the best of our ability. Nothing is more important.

In respect to Movember, everything has been submitted so at this point we are just waiting for a response from them.

I think writing to health authorities is not a bad idea. I would be happy to work on this. The same goes for “take your pills”.

I just had a call yesterday with some patients about how to move things forward.

Let’s set up a call. I will DM you.